ETH Zurich aims to step up rehabilitation research and education with the Rehab Initiative. But how are the needs of people with disabilities best met’ To discuss the issues, we hosted a roundtable with a physician, a person with a disability and a researcher.
Ms Mauchle, how was your trip to ETH today’
Thea Mauchle: I came by "bike" - that is, my wheelchair tractor. Unfortunately, not every tram and stop is wheelchair-accessible, so I have to plan my route carefully before I leave. The same goes for the location of ramps and big lifts here in ETH’s main building. I always leave myself plenty of time to get places.
So a good wheelchair alone is not enough’
Robert Riener: It takes a lot more than that. It takes barrier-free buildings; it takes good signage. Technology can help, of course - for example, an app for buildings that shows the best route for wheelchairs. Or a wheelchair that can climb stairs like the one developed by the ETH spin-off Scewo. The combination of barrier-free access and technology can offer many solutions.
Professor Leunig, what’s your take on this situation as a physician’
Michael Leunig: There are many aspects I simply don’t experience directly in my day-to-day work at an acute hospital like Schulthess Klinik. Thanks to the development of minimally invasive techniques, we’ve now reached a point where patients often go home a few days after surgery.
But the Schulthess Foundation is very much involved in ETH’s Rehab Initiative.
Leunig: The goal of the initiative is to improve the quality of life for people with disabilities, and the Schulthess Foundation is very committed to this. Although we focus on acute care in our clinic, we’re well aware that the rehabilitation phase that follows is extremely important. For example, we want to find out how to prevent sarcopenia, the loss of muscle strength in old age. Defining the term rehab as broadly as possible makes sense in view of our ageing society.
Riener: In the Rehab Initiative, we’ve adopted a very broad definition of rehabilitation that includes the entire process from the end of the acute phase through various stages of rehabilitation and on to everyday support for people with disabilities. We take rehabilitation to also mean integration in everyday life and inclusion in society.
The Schulthess Foundation is funding a professorship in data science. Why’
Leunig: If we collect data about the limits of patients’ capabilities, we can invest in measures that are much more targeted. We’ve been following this approach in orthopaedics for some time and are now applying it to smaller studies in physiotherapy. We need data science to extend these capabilities to large data sets.
Riener: The Schulthess Klinik already has a large data set based on tracking patient histories in everyday life over years following clinical treatment of their hips, knees or back. This knowledge can serve to optimise treatment and in the best case even avert diseases - in other words, we can improve prevention. And technology can be adapted to better meet the actual needs of people with disabilities.
What do you think of this approach, Ms Mauchle’
Mauchle: Above all, I think that more needs to be done to enable barrier-free access. During rehab, I learned how to live the most self-determined, independent life possible with a wheelchair. Then I came out of rehab to discover that was impossible. I was shocked. I got the impression that the public was hostile to disabled people, and that politicised me.
Has anything changed in the last 30 years’
Mauchle: A lot has improved in medicine, but not so much in society. People still expect the individual to adapt and overcome obstacles. However, there is a paradigm shift underway in the discussions about equal rights for disabled people. The perspective is shifting from the individual medical angle towards a societal outlook: How can we create an environment that enables a person with a disability or disease to take part in social life’ This may require some technical assistance. But I don’t want stair-climbing wheelchairs to give architects the idea that they can stop thinking about those "ugly" ramps.
Leunig: But can’t we also hope to see fewer and fewer barriers as new technologies emerge’ Or individuals being able to surmount these barriers relatively easily’
Mauchle: I’m not a technophobe. I just find that technology doesn’t always help me; it can actually be very burdensome. You have to obtain it, maintain it, store it. A lot of it may be exciting, technically speaking, but not necessarily practical in everyday life.
Professor Leunig, what impact have technical advances had on your field’
Leunig: So much has changed. In the past, the focus was mainly on improving implants. Now we’re seeing huge strides in surgical techniques. Our short-term rehab is all about building muscle. Perhaps there’ll soon be neurostimulation techniques not only for acute treatments but also for helping patients with chronic conditions.
What’s your experience of the transition from invention to practice’
Mauchle: Much has improved on the organic front - such as nerve tracts, bladder, intestines - and in terms of drugs and therapies. On the other hand, when I had my accident 30 years ago, the media were reporting about paralysed rats that were able to walk again. At the time, I actually thought, "Great, I’ll be walking again in ten years!" Unfortunately, we still haven’t reached that point.
Leunig: The challenge today with implants is that the regulations have grown so prohibitive - in part because of various scandals - that it’s becoming increasingly difficult to get innovations into clinical practice.
Riener: Development costs are enormous in the field of medicine. But there can be no progress without new developments. The new prosthesis we’re testing in the lab will eventually replace today’s most expensive prosthesis or make it more affordable. The same applies to new implants.
Professor Riener, what prompted the Rehab Initiative’s launch’
Riener: The Cybathlon was a big catalyst. We got a lot of positive feedback from disability organisations and from people with and without disabilities. This encouraged us to delve deeper into this topic in terms of research, teaching and technology transfer at ETH. The same goes for the public discourse about disabilities. Soon we’ll have a professorship for barrier-free architecture. And we’re thinking about a professorship in social sciences to address the topic of inclusion.
Leunig: What is fascinating about the Cybathlon is seeing things that may not be ready for mass production today, but that point the way towards the future. And what I find so compelling is that the people trying out and testing the equipment are the ones who are actually affected. Another very positive point is that it raises awareness of disability issues.
Do you think that awareness helps’
Mauchle: I believe there’s a deep-seated psychological defence against the topic of disability and therefore also against people with disabilities. Nobody wants a disability. No one wishes for a disabled child. A disability is not going to be greeted with euphoria even when super-robots become a reality. This defensive attitude prevents many things that could be done from being done. When I see restaurants with steps at the entrance, I often think they just don’t want the sight of disabled people to spoil the atmosphere.
Riener: That’s why it’s so important for people to come to terms with "otherness". This is the idea behind the Cybathlon - experience, organise and discuss things together to foster much greater acceptance and turn otherness into normality.
How do you promote these encounters’
Riener: We run a programme of visits to schools, and there are panel discussions. The Cybathlon@School programme takes us into schools because we believe that these encounters should start as early as possible. And this isn’t just about demonstrating new technologies - the children are taught by someone in a wheelchair or a person with an artificial limb.
Mauchle: Children are least likely to have problems with such encounters. They have no qualms about asking me questions when they see me on the street. But some parents respond in a very anxious, uneasy way.
Riener: Adults are often awkward about it. I had very strong inhibitions the first time I interacted with a paraplegic patient at the clinic for my doctoral thesis. Things would have been different if I had been accustomed to dealing with people with disabilities at an early age.
Ms Mauchle, as a person with a disability, how do you rate the ETH Rehab Initiative’
Mauchle: I view it with good-natured scepticism. It’s tremendously important for us to be truly involved - as disability organisations, as the people directly affected by disabilities, and as technology users.